World Vitiligo Day is celebrated annually on the 25th of June 2022, to not only create awareness but to also recognize the social neglect, bullying, psychological trauma, and disability of those affected by vitiligo. Recognition of this day started as a small movement in Nigeria in 2011, led by an individual called Ogo together with a bunch of other activists. The aim of the movement was to raise awareness of this otherwise “forgotten” condition and to debunk common myths associated with it, in memory of the late King of Pop, Michael Jackson, who also suffered from Vitiligo. Ogo then raised a petition and successfully garnered 111 signatures, which saw the beginning of a journey of the World Vitiligo Day global annual celebrations.
Vitiligo is an autoimmune disease that is thought to affect the immune system causing it to destroy melanocytes, the pigment-producing cells in our bodies. The exact mechanism resulting in the loss of melanocytes is not very clear and several theories suggest that multiple mechanisms are involved which eventually lead to the same clinical result, an uneven loss of skin color and hair on different parts of the body. Depending on the type of vitiligo, whether segmental or non-segmental, people suffering from it will present with uneven skin patches of varying extents throughout their bodies. Even though the condition is generally unpredictable, upsetting, and life-long, it is not life-threatening or contagious. Interestingly, vitiligo has a very progressive course with patients experiencing long-term phases of stability or even spontaneous reversal, .
Currently, about 70-100 million people are affected by vitiligo all over the world. Data suggests that about 1% of the population in every country suffers from this condition, with about 20-35% of patients being children. The precise cause of vitiligo has not yet been established despite decades of research. The only information available is that a not-so-well understood occurrence causes stress in the pigment-producing cells of the body. An over-active immune system then mistakenly identifies these cells as foreign and launches an attack against them. This process can occur in both children and adults of any age, ethnicity, and skin types. Some identified triggers/risk factors include other autoimmune disorders, stress, genetic predisposition, exposure to certain toxins/chemicals, an altered cellular environment, hormonal changes, and impaired digestion.
Diagnosing vitiligo is done clinically based on the white skin patches that appear on the skin. Usually, a laboratory test or a skin biopsy are unnecessary except for excluding other diseases. Living with vitiligo can be psychologically devastating because of its visible nature and the stigma associated with it, for example in Nigeria, vitiligo was confused with leprosy. The resulting negative impact on relationships and the isolation left patients distraught and hopeless. Sadly, this confusion with leprosy persists in many communities. Previously, in some communities, people suffering from vitiligo were not supposed to get married and its occurrence within marriage was considered a defect, providing grounds for divorce .
Unfortunately, there is neither a cure for vitiligo nor a universally accepted method for limiting its spread. To manage the condition, some patients will try to restore pigmentation, camouflage the white patches, or destroy the remaining skin color to have an all-white skin complexion. Light therapy is considered the gold standard for management and restoration of skin color may take one to two years of treatment. Patients are usually encouraged to take dietary supplements to enhance the phototherapy since these supplements will hardly achieve a lasting effect on their own. Other experimental treatments for vitiligo only work for some patients, and not all. Overall, relapses are common in nearly 50% of patients, especially when treatment is discontinued.
Very little research funding is available for vitiligo to better understand the condition and develop new treatments. Further, there is paucity of data on vitiligo in Sub-Saharan Africa, which limits an accurate determination of the disease burden. The available treatments for vitiligo are expensive and not covered by insurance, which makes them inaccessible. In an attempt to respond to the condition, some governments, foundations and activists have launched initiatives to support people living with vitiligo. Some of these initiatives include the free distribution of sunscreen to vitiligo patients by the Kenyan government. Vitiligo patients, because of the loss of pigment, are more prone to sunburns and skin cancers when exposed to direct sunlight for long periods of time. Sunscreen, which is usually very expensive, therefore, offers a protective effect. Village Group Kenya was also founded in 2019 to advocate for non-discrimination of people living with vitiligo and to fight for equal opportunities and for their inclusion into society. The organization is planning to open a cafeteria and employ people living with vitiligo, a move that will create a greater awareness among the Kenyan population and empower those affected with the condition. In Nigeria, Vitiligo Support and Awareness Foundation (VITSAF) was formed with a mission to provide public awareness about Vitiligo in West Africa through entertainment, education, dedicated work, and counseling. The foundation also supports and sponsors ongoing research including local herbal research with a hope of identifying the cause and treatment of the condition.
Vitiligo is a common skin disorder and although multiple progress has been made to understand its cause and determine its treatment, both areas remain unclear. Further, a misunderstanding of the condition persists in many communities around the world and people living with this condition are often excluded from school and employment opportunities. For these reasons, persons living with vitiligo continue to experience a low quality of life for a condition that they did not claim on themselves. Immediate action to support vitiligo awareness and research activities that could potentially discover a cure is imperative. These ongoing efforts, combined with our own personal initiatives, will ultimately make the world a safer place for people suffering from this disease. Should you come across a person living with vitiligo, please stop, say hello, and remind them that they are beautiful!